Rare Lung Disease

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Rare Lung Disease Week

Rare Lung Disease Week

Welcome Message

Rare diseases, according to the criteria proposed by the National Institutes of Health, affect fewer than 200,000 people in the United States and present many challenges to those affected with these disorders and for the healthcare system that must care for them.  There are between 5,000 and 8,000 distinct rare disorders that affect more than 20 million people in the United States.  Rare diseases involving the lungs affect at least 1 to 2 million Americans and thus in aggregate are not so infrequent.  Examples of rare lung diseases include sarcoidosis, cystic fibrosis, pulmonary alveolar proteinosis, alpha-1 anti-trypsin deficiency, vasculitis (Churg Strauss Syndrome), ciliopathies (Kartagener’s Syndrome), lymphagiomatosis, lymphangioleiomyomatosis, and the Hermansky-Pudlak Syndrome (HPS).  This week the Public Advisory Roundtable of the ATS in partnership with HPS Network is featuring Hermansky-Pudlack Syndrome, a rare autosomal recessive disease characterized by oculocutaneous albinism, bleeding due to platelet dysfunction, colitis, and pulmonary fibrosis in some groups of young adults.  In concert with key partner organizations such as the HPS Network, the ATS has taken a leading role in funding research and promoting awareness for these important diseases.

 

Gregory Downey, MD

Gregory Downey, MD
Chair, ATS Assembly on Allergy, Immunology and Inflammation
Member, ATS Board of Directors

Donna Appell, RN

Donna Appell, RN
Founder and President, Hermansky-Pudlak Syndrome Network
Member, ATS Public Advisory Roundtable

 

ATS Rare Lung Disease PARTNER
The Hermansky-Pudlak Syndrome Network

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The mission of the Hermansky-Pudlak Syndrome Network is to gather and disseminate information, to promote awareness and research, and to provide support to our members. This keeps the HPS Network actively developing educational materials, pamphlets, slides, and articles to help both families and professionals understand the needs created by this syndrome. The HPS Network maintains a client registry to assist with networking individuals, with each other and with medical research.